Wow. Today marks the ONE YEAR ANNIVERSARY of Lennon's life-saving treatment, Zolgensma. To commemorate Lennon's 1st birthday, and this enormous milestone, we celebrated   with a lemon themed party, surrounded by numerous friends and family. Our strong girl is doing better than we could have imagined!! Her latest physical milestones have included pulling herself to stand and beginning to walk alongside furniture.  Pre-treatment, Lennon would have never been able to sit up because the degeneration with SMA type 1 is so aggressive. We are reminded everyday, through Lennon, that our God is a miracle worker! 

Speaking of miraculous, we went back to Gillete for Lennons bi-annual evaluations, and we were informed that Lennon is the only patient at Gillete who has been diagnosed by newborn screen, and has thus far been asymptomatic... We couldn't believe it! It is a humbling place to be. With the treatment for SMA only being 5 years old, and the previous prognosis being palliative care and a 2-year max life expectancy, we still can't wrap our heads around it all. 

Lennon will continue to be monitored by her neuromuscular team at Gillete as she develops and likely for the rest of her life, especially since the oldest person living to have received Zolgensma isn't any older than 7-years-old. We hope and pray that Lennon continues to grow into the strong and resilient girl we already see her becoming, and that we never take her life for granted. At the CureSMA conference that we attended back in June, we were able to meet numerous children and adults with varying degrees of SMA. We met so many wonderful people, and someone at the conference put it perfectly... The SMA community is the best community we never wanted to be apart of.

1 year ago I made this video of Lennons treatment:

https://www.instagram.com/reel/CjmJXkYjXGC/?utm_source=ig_web_copy_link&igshid=MzRlODBiNWFlZA==